Beyond Batten Disease Foundation

Join us in our mission to find a cure for Batten disease and prevent hundreds of similar rare genetic diseases that claim the lives of thousands of children every year.

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  • About Us

    • About the Foundation

      • Mission and History
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      Hugs for Hudson

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      Tyler's Mission

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      Bind Up Batten

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      Chase The Cure

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      Rare Sisters

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    • BBDF’s Role and Impact

      • 2016/2017 Annual Report
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      • Latest Update
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    • Contact Us

      Beyond Batten Disease Foundation:

      PO Box 50221
      Austin, TX 78763
      Phone: 512-275-2600
      Fax: 512-637-6333
      info@beyondbatten.org

      Submit an Inquiry »

  • Understanding Batten

    • About Batten Disease

      • What is Batten?
      • Diagnosis/Symptoms
      • Prognosis
      • Screening
      • Living with Batten

    • Family Stories

      • Family Videos
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    • Contact Us

      Beyond Batten Disease Foundation:

      PO Box 50221
      Austin, TX 78763
      Phone: 512-275-2600
      Fax: 512-637-6333
      info@beyondbatten.org

      Submit an Inquiry »

  • Research

    • What We Know

      • State of the Science
      • CLN3 Gene
      • Screening

    • Foundation Driven

      • Our Strategy
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    • For Researchers

      • About Funding
      • Forms and Instructions
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    • Contact Dr. Danielle Kerkovich

      Danielle M. Kerkovich, Ph.D.
      Phone: 202-812-6462
      Email Danielle

  • Get Involved

    • OVERVIEW

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    • UPCOMING EVENTS

      • Run to the Sun Fun Run
      • Batten Bash
      • Taking a Swing at Batten
  • Be Project

    • Introducing the

      BBDF BE Project

      a campaign to fund the treatment for Batten disease

      Read More »

    • Who Will You Be?

      • BE an Amazon
      • BE the Change
      • BE a Connector
      • BE a Donor
      • BE a Hero
      • BE the Hope

    • BE RECOGNIZED

      • Be First Donors

    • Contact Us

      Beyond Batten Disease Foundation:

      PO Box 50221
      Austin, TX 78763
      Phone: 512-275-2600
      Fax: 512-637-6333
      info@beyondbatten.org

      Submit an Inquiry »

  • BBDF Blog

Volunteer

Beyond Batten Disease Foundation  ⁄  You Can Get Involved in Several Ways  ⁄  Volunteer

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Contact Us

  • 512-275-2600
  • info@beyondbatten.org
  • PO Box 50221
    Austin, TX 78763
  • Mon to Fri - 8:30am to 5:30pm

What’s New?

  • We did it! Thank you from Garland January 9, 2019
  • RARE Webinar: An Educational Webinar for the Batten Disease Community January 8, 2019
  • Good Food, Good Times, and Good People at Honest Mary’s Fundraiser December 28, 2018

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